What Should Happen to our Medical Records When We Die?

By Jon Cornwall

In the next 200 years, at least 20 billion people will die. A good proportion of these people are going to have electronic medical records, and that begs the question: what are we going to do with all this posthumous medical data? Despite the seemingly logical and inevitable application of medical data from deceased persons for research and healthcare both now and in the future, the issue of how best to manage posthumous medical records is currently unclear.

Presently, large medical data sets do exist and have their own uses, though largely these are data sets containing ‘anonymous’ data. In the future, if medicine is to deliver on the promise of truly ‘personalized’ medicine, then electronic medical records will potentially have increasing value and relevance for our generations of descendants. This will, however, entail the public having to consider how much privacy and anonymity they are willing to part with in regard to information arising from their medical records. After all, enabling our medical records with the power to influence personalized medicine for our descendants cannot happen without knowing who we, or our descendants, actually are.  Read More

Medicine doctor and stethoscope in hand touching icon medical network connection with modern virtual screen interface, medical technology network concept

Data-driven Medicine Needs a New Profession: Health Information Counseling

By Barbara Prainsack, Alena Buyx, and Amelia Fiske

Have you ever clicked ‘I agree’ to share information about yourself on a health app on your smartphone? Wondered if the results of new therapy reported on a patient community website were accurate? Considered altering a medical device to better meet your own needs, but had doubts about how the changes might affect its function?

While these kinds of decisions are increasingly routine, there is no clear path for getting information on health-related devices, advice on what data to collect, how to evaluate medical information found online, or concerns one might have around data sharing on patient platforms.

It’s not only patients who are facing these questions in the age of big data in medicine. Clinicians are also increasingly confronted with diverse forms of molecular, genetic, lifestyle, and digital data, and often the quality, meaning, and actionability of this data is unclear.

The difficulties of interpreting unstructured data, such as symptom logs recorded on personal devices, add another layer of complexity for clinicians trying to decide which course of action would best meet their duty of beneficence and enable the best possible care for patients.

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‘Big Data, Health Law, and Bioethics’ Examines the Intersection of Major Issues in Health Care

When data from all aspects of our lives can be relevant to our health – from our habits at the grocery store and our Google searches to our FitBit data and our medical records – can we really differentiate between big data and health big data? Will health big data be used for good, such as to improve drug safety, or ill, as in insurance discrimination? Will it disrupt health care (and the health care system) as we know it? Will it be possible to protect our health privacy? What barriers will there be to collecting and utilizing health big data? What role should law play, and what ethical concerns may arise? A new timely, groundbreaking volume explores these questions and more from a variety of perspectives, examining how law promotes or discourages the use of big data in the health care sphere, and also what we can learn from other sectors.

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